Fighting the Good Fight

Published September 19, 2017 by Deb Ragosta

Every six weeks, I go to Dana-Farber Cancer Institute (DFCI) in Boston for labs and a visit with my clinical trial oncologist. If all is well, I leave DFCI with a new box of trial medication to get me through the next six weeks when I will return for scans, as well as lab work and another visit with the oncologist. The hardest part of going to a large cancer center is that you see hundreds of people, most of whom are either patients, their friends or relatives. You can always tell the newbies because they usually come with an entourage and are confused about the way things are done at DFCI. There’s a certain rhythm of movement from the elevators to the registration desk, to the lab, then to visits with doctors and/or scans and other diagnostic imaging. When patients are new, they look scared and not knowing the rhythm throws them a bit further off kilter than they already are, just by the fact they are facing their diagnosis and new reality. One thing of which I’m sure, however, is that the doctors, nurses, aides and staff who work in cancer centers are truly touched by angels as they treat their patients with an empathy that must be in their DNA. How else could they treat patients who run the spectrum from shock to anger to disbelief?  From being a survivor to being terminal? There are no two cancer patients whose cancer, prognosis and ability to deal with their new reality are exactly the same. In any case, I want to jump up and tell them that regardless of where they are in their cancer journey, “never stop fighting the good fight.”

A few weeks ago, my dad was diagnosed with lung cancer. We live more than 200 miles apart, so the only consistent support I can offer him is by phone. I pray for him to have the strength and courage to face the disease and be able to keep moving forward, even though he might have some setbacks. He has made his treatment choices and with the help of his amazing wife, is moving forward comfortable with those choices. Like the newbies at DFCI, I’m sure he’s experiencing a wide range of emotions, but if he were to ask me how to live with having cancer, the only advice I could really offer is for him to fight the good fight.

When I returned from my last DFCI visit, I came home to the devastating news that my dear friend, Allan had passed away a few days earlier after living with prostate cancer for 14 years. He and I grew up in the same New Jersey town, but he was two years older than me. Although his cousins and sister were my classmates, Allan and I got to be friends about five years ago, first through FaceBook, then by way of visits every few months. (He lived in NY State, but received treatment at Mass General.) In order to help him break up his long drive, several times he stayed at my condo. We even went to a Red Sox game together, even though he was a Mets fan and I’m a Yankee fan. Because we had several things in addition to having cancer in common, we clicked as friends. Even when he moved his treatments closer to his home, he and I talked by phone every month or so. During our last conversation, just weeks before he passed, we assured each other we were doing good. Our conversation ended, as did every conversation with my saying “I love you” and him saying, “I love you, too.” We often talked about taking one day at a time, but whenever I think about Allan, I will always admire him because he never stopped fighting the good fight.

Next month is Breast Cancer Awareness Month, as is every October. For me, October is more than the month in which we are bombarded with everything pink. It marks another anniversary of my stage IV diagnosis. In October, it will be 8 years since that diagnosis. I would be lying if I said there was even one day since October, 2009 that came and went without my thinking about the fact I have metastatic breast cancer. I ground myself with the things that have happened since then, especially those I wondered if I’d live to see. At the top of that list is that my grandchildren, Brandon and Natalie get to have a Nonni who they know and will remember, even though they are only 3 years and 18 months old, respectively. I want them to know I never gave up and never gave in.

I get asked all the time how I can be so upbeat, despite having a terminal disease. I’ve thought a lot about the answer and know that I have so many reasons to live and so many milestones I want to be around for (like seeing Brandon and Natalie on their first days of kindergarten.) In the end, however, even though I know breast cancer will probably win, it will never defeat me because I will never, ever stop fighting the good fight!

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

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My Long, Strange Trip

Published August 1, 2017 by Deb Ragosta

If someone told me on my 35th birthday that on my 63rd birthday, I would be looking back at 28 years of living with breast cancer, I probably would have told that person I was too young to get breast cancer because only older women like Betty Ford, Nancy Reagan and Shirley Temple got breast cancer. In 1990, breast cancer awareness was just coming into vogue as was a world where we sold our souls to the purveyors of pink. Following my stage 1 diagnosis in 1990, I walked the walks, wore the ribbons and bought into the Komen karma. Even after my diagnosis, however, I never really thought someday, I’d be dealing with a much more dangerous and deadly intruder. It really wasn’t talked about, probably because the fundraising organizations wanted to present a feelgood, everyone-gets-cured vibe.

Almost 20 years later, a freak accident led to the discovery that the breast cancer had spread to my bones. In the click of an x-ray, I went from cured to terminal. In the 8 years since that diagnosis, I’ve been told many times by both family and friends something to the effect of “I don’t know how you do it” or even asked, “how do you do it?” My answer is that I take one day at a time and live my life as a woman who happens to have stage 4 breast cancer, rather than as a terminal cancer patient who happens to be a woman. I could have easily let having metastatic breast cancer take over my life, especially with mortality statistics that are very easy to find with a simple Google search. Support groups (both in-person and on-line) can be a great help, but it is very difficult to lose a person you’ve shared your deepest thoughts with. When that happens, it’s hard not to let the reality of the disease take over. I’d like to think they are living on through all who were affected by their abilities to help and support others, even as they came to the end of their own journeys.

I can’t say those dour stats didn’t upset me. When you’re at day one of a diagnosis then find National Cancer Institute statistics stating the chance of living 5 years with that diagnosis is 14%, it’s hard to stay focused and positive. When the same renowned authority says the median survival rate is less than 36 months, the future sure doesn’t look very promising. I decided early on, however, that I could either let myself fall into a pit of despair or make a conscious decision to fight the effects of knowing that one way or another, I was going to be a statistic. I chose to think of myself as someone on the positive side of the statistics, rather than one destined to be on the negative side. That made all the difference for me. Having stage 4 breast cancer is not the first thing I think about in the morning, or is it the last thing I think about at night. It is not what controls my life and the non-medical choices I make.

Of course, I’ve had setbacks. Unfortunately, we all do. I don’t like having to change a medication because it’s not working for me anymore. I’m currently participating in a clinical trial at Dana-Farber Cancer Institute in Boston, testing dosage for a new drug, Enobosarm. I began the trial in April and thus far, all is well. My scans are good and my CA 27-29 tumor markers have dropped from 114 to 48 (the upper normal for this marker is 36.) There are still a few oral medications I haven’t tried yet, but I felt the time was right to participate in another clinical trial.

I’ve been on trials before, including one in the 1990’s which tested the efficacy of Tamoxifen for certain stage 1 breast cancers. Now, Tamoxifen is the standard of care for my type of cancer and is often the first line of treatment for estrogen/progesterone positive breast cancers in premenopausal women. Even though the magical cure for breast cancer hasn’t been found, the more drugs gaining FDA approval, the more choices we have, which will hopefully add years to our lives. I participate in the trials for my daughter, my granddaughter and the women and men of their generations who might face living with breast cancer at some point in their lives. If my cancer progresses while I’m on Enobosarm, I’ll go back to Ibrance, which is the latest drug to gain FDA approval for certain types of breast cancer and is widely prescribed. Participating in clinical trials allows me to have some control over a disease I can’t control.

As I get further and further removed from those NIH statistics that were reality in 2009, things have changed. There is still no cure, but more patients are living longer and there are even clinical trials for patients who are in the “10+ year club” since their stage 4 diagnoses. I hope to be able to participate in one of those trials and have no reason to believe I won’t.

When I was 35, I was diagnosed with Stage 1 breast cancer. Almost 20 years later, I found out my cancer had spread to my bones. I was 55. Today, I am 63. To quote the Grateful Dead, “what a long, strange trip it’s been.” In my almost 28-year journey with breast cancer, I’ve had my ups, downs and in-betweens but I never looked back, never had regrets and never gave up the hope of a better day.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

Living with Cancer

Published May 5, 2017 by Deb Ragosta

I was recently interviewed for this article in the June edition of Kiplinger’s Magazine. The article focuses on how much living with cancer has changed and will continue to change.

Never give up, never loose hope and don’t stop believing!

http://www.kiplinger.com/article/insurance/T027-C000-S002-living-with-cancer.html

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

Changes

Published April 30, 2017 by Deb Ragosta

Ch-ch-changes – Pretty soon now you’re gonna get older – Time may change me

But I can’t trace time – I said that time may change me – But I can’t trace time.                                                                                                                                                – David Bowie

Of all the rock stars and actors of my generation who passed in 2016, the loss of David Bowie early in the year represented the beginning of the end of the stars of the baby boomer generation. Radio stations played his music and we were reminded of how much like a chameleon he was in the fifty or so years of his fame. One of his earliest hits, “Changes” from the 1971 album, “Hunky Dory” was written when he was young and on the road to international and eternal stardom. Even at the beginning of his career, David understood that in this life and the journey we take through it, regardless of who we are and our plan for the future, we can count on one thing – change. Change can be planned, or can be the result of things totally out of our control. How we accept and adapt to change can make the difference between having a wonderful life and one full of regrets over life choices that may have led to unplanned and or unwanted change.

Those diagnosed with stage 4 breast cancer (or any cancer) face change from the moment they hear the words, “your cancer has spread” or “you have cancer.” Some can never get past hearing those words. They are facing change, but may never be willing to actually accept it. For many, especially those diagnosed at stage 1, treatment ends and they are adamant that having cancer did not change them. Their hair grows back, the appointments end and they go back to their pre-diagnosis lives. They are proud to be survivors.

I am now in my 8th year since being diagnosed with metastatic breast cancer. I left my job at the end of 2014 and applied for Social Security Disability (more for my back condition than for the breast cancer). Leaving my job when I did was a huge and unexpected change for me. I learned from it that the anger I had as a result of the situation was because I didn’t choose that change. It was handed to me without my input. Now, however, after much thought and reflection, I know it was time to leave the job I loved because my back condition made functioning in a full-time job more and more difficult. 

Tomorrow is May 1st and I’m facing a another huge life-change. Since I’ve been collecting SSDI for 2 years, I automatically qualify for Medicare (even though I am under 65) and it goes into effect tomorrow. I’m not quite sure this was a change I would have chosen had I been given the choice. The amount of my monthly disability will decrease by the amount that will be taken out for Medicare Part B. Then, I had to find a Part D drug plan (Medicare actually picked one for me) and don’t even ask me about that damn “donut hole!” I’ll deal with that change when I get there! Luckily, my pre-Medicare health plan will automatically become my Medicare supplement, but I cringe at the thought of getting stacks of bills that I have to spend hours on the phone trying to straighten out! To paraphrase Bowie, (I must) turn and face the strange (and believe me – having Medicare is sure to be a strange change!)

The other change I am experiencing is one that I chose and one that I can change at any time. When I was first diagnosed in 1990, I was on a clinical trial for 5 years. The drug I took was tamoxifen, which, as you may know, is now the standard of care for breast cancer patients whose tumor is positive for estrogen and or progesterone receptors. I did well on the drug and credit it for keeping my cancer quiet until 2009. Although my cancer is still in my bones, only, I felt it was time to participate in another clinical study. A slight progression last year qualified me for the trial and I began the study medication 3 weeks ago. The drug is Enobosarm, but in the trial information, it is referred to at GTx-024. It’s a phase 2 study (which means it’s already passed the “safety’ test) and I was randomized to get 9 mg/day. The other group gets 18 mg/day. The purpose of the trial is to see which dosage will give the best results for patients with my type of breast cancer (estrogen positive.) I am doing the trial at Dana-Farber Cancer Institute in Boston (I am a patient at one of the DFCI satellite clinics.) If my cancer progresses while I’m on the study, I will go back to taking Ibrance. Like Ibrance before, GTx-024 is being fast-tracked by the FDA, so hopefully, this change for me will help result in another drug for other patients with stage 4 breast cancer. I like to think my trips to Boston to participate in this trial will result in a world in which my daughter and granddaughter can live without the fear of metastatic breast cancer.

Although almost twenty passed between my stage 1 and stage 4 diagnoses, I was and am determined not to let having breast cancer change the woman I am. That is different from facing and accepting the changes that come with living with a terminal disease. Yes, David – pretty soon now (we’re) gonna get older. Time may change me, but I can’t trace time. I said that time may change me, but I can’t trace time. What I can do, however is turn every change – planned and unplanned into a positive way to help me travel this journey I’m on.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

For Metastatic Breast Cancer Patient, DF/BWCC Milford ‘Feels Like Family’

Published January 28, 2017 by Deb Ragosta

I was recently interviewed for Dana-Farber Cancer Institute’s Insight newsletter. Many thanks to writer Saul Wisnia for bringing my story to life.

http://blog.dana-farber.org/insight/2017/01/for-metastatic-breast-cancer-patient-dfbwcc-milford-feels-like-family/

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

It’s ALL About Time

Published October 14, 2016 by Deb Ragosta

Check out my submission for It’s About Time MBC:

Deb: It’s ALL About Time

Keeping My Head Above Water

Published September 10, 2016 by Deb Ragosta

Over the past seven years, I’ve had many people who either know or just found out I have stage IV breast cancer, say something like “You’re always so positive and upbeat. How do you do it?” My response is something like “what choice do I have?” or “what’s the point of complaining or feeling sorry for myself?”  I try not to use the “cancer card” but admit I have mentioned my disease when trying to get my point across to health insurance reps or even my condo association when trying to get it to throw salt on my sloped parking spot to melt the ice so I can actually get to my car in the winter (the bone mets has affected my back.) 

As much as I would like to think I am in total control of my feelings and reactions involving my illness, deep in my heart and mind, I know I am not. In fact, if I am totally honest with myself, the facade I wear to those around me is far from what I’m actually hiding.  It took me a while, but I was finally able to recognize and admit that I am no more immune to the worry, fear and lack of control that a cancer diagnosis brings than anyone else. Since my diagnosis and for the rest of my life, I will be trying to keep my head above water – just like everyone else who is dealing with a terminal disease.

When my bone metastasis was discovered in 2009, I spent a fair amount of time on the internet investigating stage IV breast cancer. I had no idea that even after all those “pink for a cure” years, and nearly 20 years since my stage one diagnosis, there was no cure! Once I wrapped my head around the fact my disease was now terminal, the next step was to find a site that would tell me exactly how much time I had left. The statistics I did find were downright scary, to say the least. They varied slightly, but the one that still stands out in my mind stated that only 14% of patients with stage IV breast cancer survive for five years (although, thankfully, this statistic has improved since 2009.) That one sent me reeling and searching for help. I tried a support group for metastatic breast cancer patients, but the drive to get to it was long and only four or five women attended. Having attended a general breast cancer support group for five years in the 1990’s, I didn’t think a general group would be the right fit for me and my new diagnosis. If anything, I was a walking advertisement of the fact that regardless of the amount of time that goes by after a stage one diagnosis, we are never totally free of the demon that may be growing inside. That’s a tough thought for newly diagnosed women and I didn’t want to be the bearer of bad news at a time they were looking for positive reinforcement. I found an on-line support group, BCMETS.org on which I still go to every day to read other’s posts and post my own questions or comments. Many of the women who join the group when they are first diagnosed are scared and looking for answers. Some of those go on to be the strength of the group with their knowledge, advocacy and support. We lose many – an ugly reminder of the reality of metastatic breast cancer, but there are a few women who are either nearing or have passed the 10-year mark since their diagnosis.

I started this blog in 2010 as a way to help myself come to terms with having metastatic breast cancer. I’ve facilitated several “Writing About Cancer” workshops and I’m active on Twitter (@debragosta) always pushing my #DontForgetBCMets hashtag and supporting others by spreading our message. Although I’d like to think I do these things to help others, getting involved in even a small way has helped me become a part of my new world.

I would be lying to myself to even think I’m at a point where I am at ease with my diagnosis or that I ever will be, but I have accepted that fact. There is no chance of my ever being able to forget I have stage IV breast cancer. Having to get lab work and see my oncologist every four weeks makes it impossible to put my diagnosis in a lock-box and tuck it away. Abnormal lab results can cause an anxiety attack, not to mention waiting for scan results. In the almost seven years since my stage IV diagnosis, I have been on eight different treatments, as anything perceived as a possible progression may indicate a time for a change. My breast cancer is in my bones only and I’ve never had IV chemotherapy. Once it begins to attack my organs, however, I know there will be more medication changes and I will eventually receive IV chemo. I am afraid of progression, but there are few people I can share this with because everyone around me wants to believe, as they often say, “you’ll be fine.” Sometimes, I want to scream, “NO – I won’t be fine!” Of course, then I risk being labeled as “Debby Downer.” (I’ve actually lost a very close friend because she couldn’t handle my diagnosis and I mistakenly thought I could share my fears about having BC mets with her. Strangely, losing her as a friend bothers me more than having to tip-toe around my disease with several close family members. I looked at her as a source of strength and I was wrong. That will sadden me for the rest of my life.) Although I would love to take well-intentioned advice to “put it out of my mind” or “try thinking about something else,” it’s simply not that easy. In fact, every day can be a struggle.

The reality of having metastatic breast cancer, however, is that I won’t be fine. Although my medications will change and I know the cancer will eventually spread to other parts of my body, I will continue taking one day at a time. I will live every day of the rest of my life just trying to keep my head above water.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

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